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I finally got tested for Celiac disease a couple weeks ago after a false positive on the Biocard test. They came back negative. My next step was the allergist because my fast heart rate after eating was getting absurd and the stomach cramps were back. So the allergist did a whole slew of skin prick tests. I came up positive for being allergic to oranges, cantaloupe, watermelon, lettuce, onion, beef, lamb, and soy. I don't have any actual reactions to any of these except cantaloupe and watermelon which I have avoided for years. The soy is the one that stuck out to me. Does anyone happen to know anything about soy allergies and maybe "non-typical" symptoms (if they exist)? Could they mimic the celiac symptoms I thought I was having (diarrhea, weight loss, tachycardia, bloating, etc.)? I've never had any symptoms that suggest a soy allergy, yet the skin test came back really positive with a large welt.

Wow. I'm really starting to think this has GOT to be gluten. We ordered in at-home celiac test. I know it's a shot in the dark, but a shot in the dark is still a shot. So I started eating gluten again. Two nights ago I ate two pieces of plain cheap wheat bread that I had left over from before I stopped eating gluten. I had immediate stomach pains within half an hour, but it didn't turn into much. However, the next morning I woke up with almost flu-like symptoms: a TERRIBLE headache, achy body, and exhaustion and feeling constantly on the point of tears. My hands also ached, especially in the joints of my fingers, which was something I've never felt before. Later that morning I had some cereal that I mistakenly thought was gluten free from the cafeteria (Crispix) and got really jittery not long afterwards. Yesterday someone made me grilled cheese on some really nice wheat bread and my heart rate shot up to 140 (it always seems to be the really nice 100% whole wheat/grain bread that makes my heart rate shoot up). Tonight like a complete idiot I said "Why not?" and ate some pizza and cinnamon sticks--my cravings got intense again just from reintroducing those few things back and I just REALLY wanted pizza--and I got so, so sick. An hour later I was in a fetal position with cramps that hit every few minutes for a while. I've run to the bathroom twice since. The weirdest symptoms have been being absolutely desperately thirsty all evening and sweating even though I've just laid around all evening. And of course my heart rate has been wonky and irregular. All through the past few days I've had terrible brain fog and exhaustion that is more severe than before I even cut out the gluten.
So obviously no more pizza for me Since I wasn't gluten free for long at all, two pieces of bread (either by themselves or as a sandwich) is all I've been eating and what I'm planning on eating. I'm sticking to the diet I've had over the past two weeks otherwise.The test should be delivered next week sometime so I'll see if anything happens with that.

I had no idea that there were at home tests. That would definitely be something to possibly look into.
I've made sure to eat carbs. I did the Atkins diet a few years ago for a week and a half or so and had the "Atkins Flu", which was a thousand times worse than what I've dealt with for the past several days, all the way through it. I was exhausted all through it and was literally gagging down food. I finally had to stop when I ended up with a migraine with an aura (my first EVER aura). I just couldn't deal with the no/low carbs. It works well for some people...I just ended up really sick. I figured there were healthy ways to still eat carbs. So to avoid that whole situation, I've been sure to eat carbohydrates.
I'm becoming more and more sensitive to dairy the longer I cut out the gluten. I had a bowl of cereal this morning and I'm already nauseous. So that might have to go. We have "breakfast for dinner" parties at my apartment sometimes and last night I tried making gluten free pancakes. They were pretty good. But half way through eating dinner last night, I started feeling sick like I would after eating gluteny carb-loaded meals. So there was either something in the sausage or bacon I ate (I trusted my roommate who said it was just plain sausage from a family farm and they don't put any fillers or anything in it), there was some contamination from the skillet I used even though it was cleaned very well and they let me make my pancakes first or the fact that there was flour flying everywhere in the kitchen from everyone else's pancakes, OR I'm just reacting to something else. All I know is that I haven't had that severe of stomach symptoms since I cut out the gluten a week ago.
This is oh so complicated sometimes...Especially without any diagnosis either way.

It's good to hear that this wasn't out of the ordinary
I've tried to get two doctors now to test me, but they just laughed me off. One, who I had just been referred to and knew NOTHING about me other than I had been having diarrhea and anxiety, almost angrily asked me "WHO told you that?" when I mentioned gluten. She just said matter-of-factly, "You don't have celiac." And that was the end of it. If there's improvement within the next month or two, I'm going to my doctor at home and I'll tell him I cut gluten out and there was improvement and maybe THAT will convince him to actually test me. I realize that I'll have to do a challenge, but I couldn't just keep sitting around and paying for doctors and waiting for one of them to believe me enough to order tests. This was seriously starting to interfere with my life and classes. And if it's not gluten, I'll go down a different road for answers.

Is it ok to make things in the same pot/pan that something with gluten has been made in as long as it's cleaned out really well? Or can there still be some left behind? My roommates and I all share the same cookware, but I've been trying to be really careful with the pots or pans I use. I can't really afford my own set right now either.

I've been gluten free for 6 days now (it's a personal test--I haven't actually been diagnosed). The first day I felt no difference, but since the second day I've been tired and extremely anxious. For the past two days, I've had that achy exhausted feeling right before you get really sick, but I haven't gotten sick. I just don't feel well at all...My appetite is gone so I know I'm not eating nearly enough. Is it possible I'm not getting enough nutrients and am already feeling the effects? Milk has actually been irritating my stomach for the past couple of days (uncomfortable pressure in my stomach after eating milk and cereal). I'm going to stop eating chocolate as my anxiety seems to be a lot worse after eating it and I'm not craving sweets anymore. My inflammation (hidradenitis suppurativa and facial acne) have actually gotten WORSE as well over the past few days.

After two doctors basically laughed at me when I dared to suggest that gluten could be causing my digestive/anxiety problems, I decided to try gluten free for a few months. I'm keeping a food diary (hope to actually keep that up over the months haha) and if there's any improvements, I will take that darn food diary in to any of those doctors and show it to them. I might also try introducing a little gluten after a few months to see how I react. I know it might not be pleasant, but it would be a sure way to tell. I literally just started this 4 days ago though, so I'm dealing with some push back from my body. I felt jittery and tired by the second day, and yesterday I was exhausted and had an awful headache the entire day. I slept for 14 hours last night. All through this I am having the worst cravings for pancakes, bread, cupcakes; if it has flour I crave it. I even dreamed last night that I ate things with gluten and was mad at myself because I would have to start over. Today no headache, but I'm dealing with anxiety again. I eat plain M&Ms to deal with the sweet cravings for now. Those are ok, right?
I'm obviously still learning how to do this while being in college and having a balanced diet, but I want to make sure I'm doing ok. I have Chex cereal, yogurt, or eggs/yogurt for breakfast (dairy upsets my stomach a little sometimes, but I generally don't have a problem with it), lunch is rice with some kind of vegetable and cheese and an apple, or "sandwiches" made with corn tortillas with lunch meat (made sure it's gluten free), mayo, greens, and feta cheese, and dinner so far has been a whole baked sweet potato or eggs and sausage (some friends had a breakfast for dinner party and made pancakes that I obviously couldn't eat). I eat yogurt, cherry tomatoes, KIND healthy grains, or cheese as snacks. I know it's early, but the best part about this is it keeps me full for longer and I'm eating less calories while still being satisfied...I was having to eat around 2000 calories a day and constantly snacking to keep going all day before. If I got hungry, I had pretty severe hypoglycemia symptoms. I haven't really had to deal with that as much since I cut out the gluten. I'm also taking a multivitamin every day.
Anyway, I know that was information overload. But am I seeming to be doing this okay for now? I'll hopefully have even more variety as I get used to this and what I need to cook ahead of time since I'm not home in a kitchen a lot. How long can I expect the "withdrawal" symptoms (I don't know what else to call it) to last? Is there a way to keep me motivated as I don't have an official diagnosis of ANYTHING and I'm sure I'll hit a wall sometime and I'll want to quit?

I've posted a few times with various concerns that have come up in the past couple of months. Doctors have ignored my gluten concern so I've decided to cut out gluten for a few months starting next week just to see what happens since I'll be going home for a few days and can buy the groceries (I'm a poor college student and my mom agreed to buy my starting groceries ). I was weighed when I went to the doctor a few weeks ago, and I had lost 10 pounds in the four or five weeks since I had started back at college. Since then, I've lost what I'm assuming is at least another 5 pounds judging by how loose my clothes are now (everything I own is too big now). Grand total, I've lost probably 25 or so pounds since June. Granted, I'm overweight, so this isn't concerning at the moment. What is a little concerning though is the fact that I am losing the weight even though I've struggled to lose it my whole life.
At first I thought all of this weight loss was caused by the chronic diarrhea/lack of appetite. And even though my appetite isn't near what it was a few months ago, I've tracked my calorie intake for the past 3 days for a nutrition project, and I consume anywhere from 1700 to 2100 calories per day. I walk half a mile and back to class, but that's only once or twice and at most 3 times per day. My diarrhea has significantly improved recently (even though I still have overall stomach upset and neurological symptoms), but I'm still dropping the weight. I mentioned this concern to someone and they chalked it up to the fact that I'm not eating as much and walking every day and it was nothing out of the ordinary. I hesitate to complain about the weight loss, but it is something really new for me--I usually plateau at some point and I haven't yet. I'm almost down to my "thinnest" size and I haven't been there in 5 years. And back then I had to exercise an hour and a half five days a week to lose the weight. I don't think I could exercise for 45 minutes in my current condition.
What I'm wondering is if this is normally seen in a gluten intolerance/Celiac. And if losing weight despite eating 2000 calories per day and minimal exercise is in fact a "normal" thing or just more evidence that something is not going right in my digestive system. It would be different if this was occurring and I felt healthier, but that's obviously not the case right now.

Thanks for the replies. I will probably cut out dairy too. It doesn't cause the psychological and heart rate problems, but it does upset my stomach sometimes. I especially pay for it in the morning if I consume dairy before going to bed. I have found that I feel best when I don't eat actual meals. I eat several small meals over the day--Enough to keep myself from getting hungry because that causes a whole bunch of other problems. It's a delicate balance and that combined with my constant anxiety is literally driving me to insanity.

I am beyond done with this. Ever since I got sick in July with what appeared to be a stomach bug (severe loss of appetite, fast heart rate, inability to stand for more than a few minutes), I've been struggling to keep my head above water with digestive symptoms (diarrhea and loss of appetite) that come and go, exhaustion, mood swings, anxiety, and new irregular heart rhythms that while probably harmless just add to my anxiety. Just to name a few. I've lost a ton of weight (for me anyway) and I go from feeling fantastic one day to feeling doomed and ill the next. I'm just over it. And no doctor wants to listen to the possibility that it's gluten. Would it hurt to just cut it out and see what happens? I am beyond the point of caring about having an official diagnosis right now...I just want to be able to go through a day of classes and social life and feel GOOD for once. Sorry this is so negative, but I've had just an absolutely terrible day...

The clinic at my university just tested my TSH. I've gone through that battle of getting fT3 and fT4 tested before with my doctor at home, and I didn't really feel like pushing it with the clinic here since I was already pushing to try to get tested for Celiac. That would have been a whole other war to have with them. The doctor I went to of course took one look at my TSH (it was 2.17) and said I was fine.
The icing on the cake with the doctor was when she looked at my iron level of 35 (minimum is 50) and said it was a normal occurrence for "a menstruating woman" and moved right on. The clinic at school at least had the decency to call me to tell me it was low and to take supplements. To be honest, I don't even know how a doctor could sit there and listen to my symptoms and not want test for SOME kind of food intolerance either...

I was feeling so encouraged...I had been to my university health clinic twice for my digestive issues. I finally convinced them that it might have been more than anxiety, and they ruled out other things in blood work, and the only thing that came back was that my blood iron is low (no anemia yet though), my ferritin is 2 points from being low, and my B12 was 243 (the range was 180-1000, but I've read in many places elsewhere that the low range should be higher in labs and 243 doesn't exactly scream "definitely high enough" in that range anyway).
I went to the doctor, had the gall to mention gluten, and she immediately said "Oh, you don't have celiac. WHO mentioned that to you?". Mind you, I am a COMPLETELY new patient and all she knows about me is that I've been having diarrhea problems. She blew the anxiety and racing heart after eating off. She said that the diarrhea persisting for 7 weeks definitely isn't because of anxiety like I had been told a couple weeks ago though--The only positive. She wants to test my stool for bacteria or parasites. I am so frustrated/discouraged/angry. I can't afford to keep going and seeing doctors like this. I've lost ten pounds in the last month and 15 since the beginning of the summer. NEVER EVER in my life have I been able to lose weight without trying.This doesn't seem to concern any doctor though.
I just don't know what to do now. My symptoms seem to cycle around my menstrual cycle (my symptoms calm down for a week before my period but then once it starts, it's full go diarrhea, racing heart rate after eating, constant stomach pain for the next three weeks. So I've only had mild symptoms this past week. It's about to start though and I'm dreading the miserable three weeks I have ahead of me. I don't know if this was to just rant or what, but I would appreciate ANY advice. This definitely doesn't seem like something a 19 year old should be dealing with, right? I wonder sometimes if I'm trying to make something out of nothing.

Ugh. So I went to the doctor today (a PCP). I mentioned the gluten thing and she immediately said it wasn't that. She disgustingly asked who told me it could be related. Instead I'm bringing her stool samples since I said there had been mucus in my stool before. At least she doesn't think it's just anxiety though.

So my iron was 35 (range 50-150)
My b12 isn't technically low but it's not way up in the range: 243 (range 180-1000)
My TSH was 2.17 and unfortunately that's all they did for thyroid testing.
I was referred to a PCP and if she feels like I should see a specialist she'll send me to one. They told me she was a great doctor though and relates well and enjoys working with college students so that should be good.

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